Caring for a seriously ill child

Taking care of a seriously ill taitamaiti / child is one of the most difficult things mātua / parents and caregivers will ever do. Here are some tips to help.

Not only are there the physical challenges of managing their health needs, but you also need to deal with your child’s emotional needs and the impact their illness has on the whole whānau.

Here are some tips for caring for a seriously ill child.

Explaining serious illness to a child

Most mātua / parents and caregivers find it really difficult to talk to their taitamaiti / child about their serious illness. How much do you tell them? What do you tell them? Do you give honest answers to their questions?

Sometimes you might not want to give an honest answer because you want to protect your taitamaiti / child. But tamariki / children are quick to sense when something is wrong.

The best thing you can do is talk honestly and openly with them.

Younger tamariki / children might not understand what their serious illness is but they’ll be scared of everything that’s going on: the hōhipere / hospital, tests and treatments, unfamiliar people and being away from their home and whānau.

What they want most is reassurance: that you’re there with them, and the hōhipere / hospital team is there to help. Most hospitals have play specialists on staff who, through therapeutic play, can help your taitamaiti / child understand what’s going on. You and your other tamariki / children can normally join in the play, so they feel less anxious and afraid.

Older tamariki / children are better able to understand their diagnosis and, even though it’s difficult, being honest when discussing their serious illness is usually the best approach. Talking to them openly about their diagnosis, treatment and future can help to reduce the fear of all that lies ahead.

Key things your taitamaiti / child should know are:

  • That they’re sick and will be getting lots of care.
  • The hōhipere / hospital, tests and medicines may seem scary, but they’re part of helping them feel better.
  • What treatments they’re going to have. Try to prepare your taitamaiti / child for their treatments as best as you can. This includes avoiding saying “it won’t hurt” if it’s likely to be painful. Instead, be honest if a procedure may cause some pain, discomfort, stinging or pressure. Reassure them that it won’t last long, and you’ll be right there with them.
  • They’re not responsible for their illness and they didn’t do anything wrong.
  • They’re surrounded by people who love them and will be there for them.
  • They’ll be kept as comfortable as possible.

If you're finding it hard to talk to your taitamaiti / child, let your hōhipere / hospital social worker or play specialist know. They have resources that can help.

How to manage your child's behaviour

A serious illness diagnosis will have a huge impact on your taitamaiti / child. Because they’re scared and anxious, they might become more needy and dependent or argumentative and difficult. The medications your taitamaiti / child takes can also impact their behaviour, causing irritability, outbursts of anger and tears.

The entire routine changes for you and your taitamaiti / child with lengthy stays in hōhipere / hospital and attending appointments. The treatments can make your taitamaiti / child feel unwell for some time. There are the physical side effects to manage too. Especially changes in their appearance (like hair loss or weight gain) which can affect their confidence and self-image (especially in older tamariki / children).

The emotional aspect of a diagnosis can make discipline difficult, especially if you feel helpless and guilty. Watching your taitamaiti / child go through treatment is really hard. It’s completely natural to want to make your taitamaiti / child the centre of attention, offering treats and special privileges. But too much can have consequences for your taitamaiti / child and your whānau.

Tamariki / children need guidance and structure from their mātua / parents and caregivers, even when they’re unwell. Maintaining routines, structure and boundaries within the whānau can be a challenge, especially if your taitamaiti / child requires lengthy treatment and long stays in hōhipere / hospital.

During treatment, your taitamaiti / child will probably get gifts and extra attention from you and from visitors. When treatment is finished, there may be an expectation that this will continue. Issues with discipline can arise when the special attention ends and normal life resumes.

Manage your child’s behaviour by:

  • Setting behavioural limits. Make these clear to your taitamaiti / child and stick to them.
  • Adjusting expectations to how your taitamaiti / child feels physically on any given day.
  • Rewarding good behaviour with praise.
  • Making it clear to your taitamaiti / child that misbehaving will have a consequence. This could be time out or temporary revoking of privileges. Make sure that the consequence is realistic and something that you can enforce and carry out.

If you’re having a difficult time managing your child's behaviour or feel there’s something else going on – you might observe dramatic changes in your child's personality and behaviour or they won’t respect the boundaries you set, for example – have a chat to your child’s care team who can help.

Tips for caring for a seriously ill child:

  • If you’ve got a partner, remember you’re partners as well as mātua / parents and caregivers. Find time to talk to each other about the effect your child's illness is having on you and the rest of the whānau.
  • Try spending most of your hōhipere / hospital visiting time during the day and go home in the evenings to be with whānau (if possible).
  • If their treatment is going to last a while, work out a strategy to care for your taitamaiti / child while making sure other whānau members aren’t neglected.
  • Plan a little (like a week) at a time. Trying to plan for the entire length of your child’s treatment can feel overwhelming.  
  • Look after your own needs too. Rest where you can and try to keep up with friendships and favourite things.
  • Depend on others – you can’t do everything. Let them take other tamariki / children to kura / school or hobbies; drop off kai / food; or do the washing.
A young boy hides his face in his hands

Talking to your other tamariki / children

Siblings of a seriously ill taitamaiti / child can experience the same feelings as you. Your other tamariki / children may also feel resentful of the attention their brother or sister is receiving and they can feel left out, angry and isolated.

Their needs can often be overlooked, especially in the initial weeks after diagnosis, and often these feelings are because siblings feel you have enough to worry about.

These feelings may be expressed outside of the whānau, perhaps at kura / school, so it's a good idea to let teachers know that a brother or sister has been diagnosed with a serious illness.

Teachers will be aware of the stress within the whānau and can alert you to any behavioural changes at kura / school, like:

  • Withdrawing and/or becoming very quiet.
  • Crying.
  • Becoming argumentative and disruptive, angry or frustrated or fighting.
  • The quality of their schoolwork declines and/or they fall behind in class.
  • Missing days of kura / school.

If a sibling is having trouble coping, let your medical team know. Hōhipere / hospital social workers can recommend support systems (like us!) that can help.

Support your other tamariki / children by:

  • Letting them know you still care about them. With all the attention the sick taitamaiti / child is receiving, siblings may feel left out and neglected.
  • Trying to keep the whānau routines as normal as possible (you might need to enlist the support of wider whānau and friends to do this).
  • Keep tamariki / children regularly informed about what’s going on in an open and honest way.
  • Asking visitors to bring a small gift for other tamariki / children too if they have brought one for the sick taitamaiti / child.
  • Encouraging them to show their emotions and tell you how they feel. Your other tamariki / children will be on the same emotional rollercoaster as you are. Let them know it’s OK to feel anger or fear, sadness and grief. Help your tamariki / children give voice to their feelings by asking some leading questions and reassure them it’s safe to speak openly and express themselves.

Here are some common things siblings of seriously ill tamariki / children can experience.

Feelings of guilt

It’s common for a taitamaiti / child to feel that the serious illness of a sibling is their fault. Perhaps they said terrible words to them or wished that something awful would happen to them. They may feel guilty because they’re healthy and their brother or sister is not. Reassure them that nothing they said or did caused the illness.

Difficulties at kura / school

Tamariki / children at kura / school may tease or leave your tamariki / children out of social circles, fearing they may catch the serious illness from them. Let teachers know about the diagnosis so they can help other staff and pupils understand. Involving your children's close friends in discussions about the serious illness can also be helpful.

Fear of hōhipere / hospital and treatments

Younger tamariki / children in particular can be very frightened by the thought of their sibling in hōhipere / hospital and the sight of them. Seeing them, either in hōhipere / hospital (for example, with tubes attached or lying in bed) or at home (for example, hair loss), can be upsetting.

Be proactive if you can. Explain what the treatments are, what the tubes are for, how the treatments may affect their sibling and what they can expect to see. Tamariki / children can often be reassured by visiting the hōhipere / hospital and seeing their sibling, but don’t force them to go if they don’t want to.

Often one parent will spend more time at the hōhipere / hospital and the other will be with the whānau. Something as simple as a phone call from hōhipere / hospital to speak to tamariki / children at home can help everyone feel connected.

Fear that their sibling might die

Your other tamariki / children might worry that their sibling will die. This is something they might keep to themselves because they’re scared it could happen or they don’t want to upset you.

Being open and honest is important here. Explain that the medical team is providing the best possible treatment for the best possible outcome and that many tamariki / children do get better but it’s not always the case. If you feel unable to answer some questions, assure your tamariki / children that you will find the answer and let them know. Ask your medical team for advice and information.

Tips for supporting your other tamariki / children

  • Give them a choice where possible, for example "who would you like to pick you up from kura / school? Auntie Martha or Uncle Joe?"
  • Keep going with fair and consistent discipline, even during tough times.
  • Seek advice and support from your care team if you have difficulties with your other tamariki / children that you can’t manage.
  • Let your tamariki / children know they can always ask questions, speak openly and confide their fears, worries, joy and sadness with you.
  • Regularly tell your tamariki / children that you love them.
  • Give them a role to play, like sharing regular updates on social media or through messaging apps or email.
  • Involve them in the support team – it can help them feel needed and appreciated at a time when the focus is on the seriously ill taitamaiti / child. Enlist their help with running the household, doing the shopping or keeping relatives and friends informed.
  • Take as many opportunities as you can to be with your other tamariki / children - to play, cuddle and enjoy special time together.

Talking to whānau and friends

It can be difficult to tell other whānau members, relatives and friends that your taitamaiti / child is seriously ill. Every whānau is different but being open and honest can be a good way to start.

You could give them information and reading material you receive from the hōhipere / hospital – this can help others get the picture. In general, the greater the understanding, the more helpful and supportive others can be.

Here are some other ways friends and whānau can help –  it’s best to tell them what you need. Usually, they really want to help, they just don’t know how. Encourage them to coordinate themselves into a team and divide up tasks to meet your needs, like:

  • Preparing meals to bring to your home or to the hōhipere / hospital.
  • Feeding pets.
  • Developing a roster for visiting the taitamaiti / child in hōhipere / hospital or at home (in consultation with you).
  • Being a supportive ear for you and listening in a caring way.
  • Providing things your whānau enjoys, like a day at the beach or a bike ride.
  • Dropping off and picking up tamariki / children from kura / school or after-school activities (like sports, hobbies, etc.).
  • Cleaning your home, doing the laundry, watering the plants or gardening.